Download PANS-PANDAS webinar 7-15-15.pptx

Recovery from Pediatric Acute-­‐Onset Neuropsychiatric Syndromes C. Alec Pollard, Ph.D. Saint Louis University & Saint Louis Behavioral Medicine Institute Background !  Onset of some pediatric neuropsychiatric syndromes (e.g., OCD, Tics) is temporally related to infection !  Leading to the proposed autoimmune syndromes PANDAS and later PANS !  Recovery from PANDAS/PANS has both similarities and differences from that of other forms of OCD & Tics !  This presentation will discuss issues involved in recovery from PANDAS/PANS and resources available to children & their families Topics to be Covered OCD, Tics, & Associated Disorders II.  History & Definition of PANDAS/PANS III.  Treatment IV.  Issues & Resources I. 
OCD, Tics, & Associated Disorders What is OCD? 2 main features of OCD 1.  Obsessions 2.  Compulsions Obsessions anxiety/distress !  Can be about external situations or internal experiences !  !
Obsessions can involve: "  External Triggers e.g., “contaminated” objects, tasks involving responsibility, asymmetry "  Internal Triggers e.g., intrusive thoughts, urges, or images about sex, violence, or blasphemy/immorality Compulsions anxiety/distress !  Can be behavioral or mental action !  #
Form of compulsion can be: 1. Behavioral e.g., washing, checking, reassurance-­‐seeking, repeating, straightening, aligning, correcting, or evening things 2. Mental e.g., counting, thought or image replacement, prayer, mental checking, figuring-­‐it-­‐out OCD in Kids !  Fears tend be vague !  Fear often expressed as a feeling: “yucky,” “not right,” !  Anxiety expressed indirectly: “need a glass of water,” “tummy hurts” !  Distress often expressed as intolerance, “I can’t stand that” !  Aggressive behavior sometimes present, but secondary to OCD What are Tic Disorders? Tics !  Tic: a sudden, rapid, recurrent, non-­‐rhythmic stereotyped motor movement or vocalization. !  2 types: -­‐ 1) Motor (eye blinks, head jerks, mouth movements, etc.) -­‐ 2) Vocal (grunts, sniffing, coughing, words) !  Can be “Simple” or “Complex” Tic Disorders ! Provisional (Transient) Tic Disorder -­‐ either type of tic less than a year ! Persistent (Chronic) Motor or Vocal Tic Disorder -­‐ Motor or vocal tics for more than a year ! Tourette’s Disorder (Tourette Syndrome) -­‐ Motor and vocal for more than a year ! Tic Disorder, NOS Can Other Problems Accompany the OCD or Tic Disorders? N %
Other Anxiety Disorders
47
42.0 ADHD
22
19.6 ODD/CD
10
8.9
Tic Disorders
12
10.7
MDE/Dysthymia 12
10.7
One Comorbid Disorder
82
73.2 Multiple Comorbid 35
31.3 UCLA Child OCD Program History & DefiniHon of PANDAS & PANS Original term: PANDAS !  Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus Theory: infection triggers autoimmune reaction producing antibodies that interfere with area of brain (basil ganglia) responsible for motor behavior Current term: PANS !  Pediatric Acute-­‐Onset Neuropsychiatric Syndromes Focus on unique & universal feature of symptom presentation (rapid, acute onset); recognizes other potential triggers (infections and otherwise) 2/3/2011 Tanya Murphy, MD PANS !  Dramatic childhood onset of OCD !  Occurring with: !  Behavioral Regression !  Phobias especially those around eating !  Urinary symptoms (frequent urination or enuresis) !  Sensory issues !  Motor regression-­‐eg. worsening handwriting !  Symptoms are not explained best by psychosocial, medication reactions or metabolic disorder 2/3/2011 Tanya Murphy, MD CharacterisHcs !  Younger age of onset for OCD !  Onset is dramatic to the extent that the child functions at a level that is very different and frightening to the family !  Frequent association with ADHD symptoms !  Comorbid symptoms such as severe emotional lability (meltdowns and aggression), separation anxiety, change in school performance, bedtime fears, compulsive urination, food phobias 2/3/2011 Tanya Murphy, MD Possible infecHous triggers !  Group A streptococcus (tonsillitis, strep throat, etc) !  Mycoplasma (bacteria that causes respiratory symptoms and walking pneuomonia) !  Lyme’s disease (secondary to bites from ticks typically found in the Northeast) !  Viruses—less reported but influenza A !  ?? Others 2/3/2011 Tanya Murphy, MD Treatment EvaluaHon !  Comprehensive medical evaluation !  Medical Examination !  Assess for possible triggers !  Throat Culture, consider close contacts !  Assess for medical causes (the level of diagnostic testing is dependant on level of severity and regression) 2/3/2011 Tanya Murphy, MD Immunologic IntervenHon !  Antibiotic trials !  Studies with small n and most of short duration, and/or inadequate control groups !  Active comparator trial of long term prophylactic treatments showed decrease symptom flare ups !  Issues exist with case definition and duration of symptoms as well as type, dose and duration of antibiotic treatment !  However, many anecdotal reports do suggest improvement in symptoms !  IVIG (Intravenous Immunoglobin) !  Controlled trial w/ n=10 on IVIG (Perlmutter 1999) !  Anecdotal reports !  New NIH IVIG trial enrolling !  Plasmapherisis !  Steroids—mixed, case reports !  Montelukast (brand name: Singulair; leukotriene inhibitor)-­‐ observed to make OCD worse 2/3/2011 Tanya Murphy, MD Non-­‐Immunologic Treatments for OCD & TD !  Cognitive Behavior Therapy -­‐ OCD: Exposure & Response Prevention -­‐ TD: Habit Reversal, CBIT !  Medication -­‐ OCD: primarily SSRIs -­‐ TD: Neuroleptics, antihypertensives !  Occupational therapy may be helpful for fine motor skills Issues Issues: For the Child !  Immediate effect of symptoms: -­‐ distress -­‐ interference with functioning -­‐ reduction in positive reinforcement !  Secondary effects: -­‐ Shame, guilt, embarrassment, anger, frustration !  Especially with PANS: Feeling out of control, confused, frightened by the suddenness and magnitude of change Issues: For the Siblings !  Direct interference with their lives !  Conflicts with OCD sufferer !  Feeling neglected !  Resentment -­‐ the OCD sufferer gets away with things !  Fear – of the OCD sufferer’s behavior; or “could this happen to me?” !  Embarrassment, shame Issues: For the Parents !  Indirect impact -­‐ Anxiety about child/family’s welfare, -­‐ Guilt, indecision !  Direct impact -­‐ Disruption of personal life -­‐ Disruption of family life -­‐ Conflicts with OCD sufferer -­‐ Dealing with sibling issues -­‐ Threats to safety -­‐ Dealing with the school, academic issues !  Special challenge with PANS -­‐ Emergent nature of the situation -­‐ Having to adapt rapidly AddiHonal Burdens for Parents !  Challenge of finding proper treatment can be formidable for OCD/TD !  Extra challenges for PANS: -­‐ An even smaller pool of knowledgeable providers -­‐ Navigating the pursuit of treatment -­‐ Differences of opinion in the field -­‐ Treat the PANS, the OCD/TD, or both? -­‐ When & how to switch or combine approaches? -­‐ Evaluating risks & benefits of treatment options Resources Relevant NaHonal OrganizaHons !  International OCD Foundation especially: www.ocdfoundation.org/ocdinkids !  Anxiety and Depression Association of America !  OCD & Parenting Online Support Group !  Tourette Syndrome Association !  Pandas Network !  Pandas Physician Network AddiHonal Sources of InformaHon !  Special issue of the Journal of Child and Adolescent Psychopharmacology on PANS: February 2015, Volume 25. !  FAQs about PANDAS, National Institute Of Mental Health (http://www.nimh.nih.gov/health/
publications/pandas/index.shtml ) Local, Regional Resources !  Advocacy, Information, & Support -­‐ St. Louis OCD Support Group -­‐ OC Anonymous -­‐ Midwest PANDAS/PANS Parent Association !  Treatment -­‐ Center for OCD & Anxiety-­‐Related Disorders, Saint Louis Behavioral Medicine Institute -­‐ Child & Adolescent Psychiatry Services, Washington University -­‐ Tracy Fritz, M.D, Family Medicine,. St. Louis, MO -­‐ Michael Cooperstock, M.D., Pediatrics, Columbia, MO Conclusion !  More research needed: -­‐ What factors are necessary for the development of PANS? -­‐ Is this one syndrome or a collection of syndromes with differing feature and causes? -­‐ Which treatments will be effective for which individuals? -­‐ Can we identify ways to predict and perhaps prevent PANS? !  In the meantime, standard OCD/TD treatments and immunologic therapies offer hope of a better life to many children and their families. C. Alec Pollard, Ph.D. Director, Center for OCD & Anxiety-­‐Related Disorders Professor Emeritus of Family & Community Medicine, Saint Louis University -­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐-­‐ Saint Louis Behavioral Medicine Institute 1129 Macklind Avenue St. Louis, MO 314-­‐534-­‐0200, Ext 424 Website: www.slbmi.com